Advice please! AC learning difficulties/disabilities

[insmithereens]

Hi all,

Looking for advice from anyone with any useful/relevant experience please.

We're matched with a sibling pair. Met the kids & medical advisor & certain things came to light we hadn't been told previously:

-Doctor says v. Likely FAS & Kids both have number of facial features

• BM extremely low (lower than borderline) IQ
• some serious mental health issues which could have genetic ramifications suddenly get thrown in the mix too.

The kids are lovely & we are trying to weigh up whether this new scenario is still possible for us - bearing in mind we have no experience of supporting children or adults with learning difficulties or disabilities & last week we naively thought we were matched with two healthy NT kids. But I feel this happens a lot with adoption!

I'm hoping to hear advice from adopters of children with this potential level of need. How have they progressed through school & into their teens? Without any diagnosis is support still available? Have they been able to live independently? Would you do it again? Any other advice would be hugely appreciated as we have to make the right decision for the kids & us.

TIA

Boston that is really good advice thank you!

I think we've come to some conclusions at least - we will postpone panel, we need all paper work completed, we need to speak to the doc again, we need a more accurate picture of the children's likely needs, we need to know exactly what support they are offering & we need more time to make the right decision.

We're aware not all of that will come to fruition but at least it puts us back in control & perhaps means, whether we go forward with this match or someone else does, we've advocated for children's best interests & made decisions based on that.

Really do appreciate everyone's support, you've all been so helpful & it's been great having insight from ppl who genuinely understand. I feel like we've learnt a lot in this process! Thanks everyone 💐

They will tell you it has to be means tested. It will be very hard to get AA without a formal diagnosis, and a bit of developmental delay won't be enough.

I'd be wary of the 'get them placed and then just foster' plan suggested above- a) they may not allow you to foster them b) if you can get an SGO or something, financial support still could not be there, and mostly c) once you have these babies home, you'll want to be a normal family, and get rid of the SWs, and get legal, because that's what you've come into this to do- adopt. If you wanted to foster, you'd be fostering.

It can be possible to get a non-means tested allowance, but very very difficult, and you need to accept they may prefer not to place the children with you, if they thing they can get cheaper mugs elsewhere. Even if you are the best family for them. It shouldn't be the case, but it is.

I'd be wary of a means tested allowance, or depending on the adoption support fund. Money is dwindling faster than you can say 'austerity'.

At 2.5 and 1, their needs are still so unknown. It would alarm me that you found out about the FAS signs from the paed, and not the SW, that sounds very poor.

If the youngest is 1, how have they had changes in SW? Does the department have such high turn over? That, too, is concerning.

You've already had some great advice but do you know if there is a Paed with experience in FAS/FASD in your area? Could the LA arrange for the children to be seen and an assessment undertaken? Or at the very least get the ball rolling? I appreciate they're just babies so it's very hard to get any idea, but just as a word of warning we also thought we were adopting a healthy NT child...who by age 3 had significant delays and health/behavioural concerns. My advice is paint yourself a worst case scenario. If these children do have FAS traits/behaviour/medical conditions, and MH issues, and a low IQ, would you be happy to parent them for the next 20-30 years?

Hi Thomas, thanks for your advice again it is appreciated. I think if we dig our heels in about aa they will look for a match elsewhere so the first thing we intend to push for is completed paperwork. The 1 year olds paperwork only goes up to them being a few months old as the SW went off sick & their new SW started when LO was 11 months so there's a big gap.

Hope I think this worse case scenario is what has frightened us so much. What if they can't live independently. We are not wealthy & without help from somewhere we can't see how we could support them financially forever, least of all if one of us has to stop working or later when we're not around. But what if they're fine? We so want that to be the case but can't tell if we're being extreme or naive. Chances are the kids would work out somewhere in between right?

Older friends who adopted a child, now an adult, with quite complex needs tell everyone: see if you can visit a few teenagers and adults with the condition your AS is likely to have. See how you'd feel about this being your child. If you feel that you can manage, go for it, the child needs you. But if you don't, then that's also good to know, and there will be other kids who also need parents.

We followed the advice and decided not to go for it. It was very hard at the time but in hindsight 100% the right decision.

Hi Leyani that's really sound advice thank you. Did you adopt in the end?

We adopted a LO whose B mother had "moderate learning disabilities" and BF had "mild difficulties". The LA had not looked into it any further. Also swore blind the only thing BM took during pregnancy were legal highs.
Once baby placed with us we were allowed access to medical reports (foster to adopt) and it was clearly written on BM's post natal report that she had used heroin, crack, alcohol and "other" during pregnancy. A few months on, we had an assessment on LO which led to her having a Globel Delay diagnosis. We pushed for a FAS diagnosis and because of that they did a chromosome screening to rule out any other options. Turns out LO has a rare genetic condition that is more than likely passed down from her mother and is known to always cause delays, often seizures, and more than likely autism.
Guess what - the LA want absolutely nothing to do with it, no support, just a surprised face and an oh dear.
My DP is now a full time parent when we had hoped for her to at least have a few hours a week to be able to work. DD is a joy but is functioning at a much lower level than other children. We are fighting to get DLA but so far have been rejected once - I am doing my research as we are struggling a bit financially on one income.
They will play it down and play dumb. It turns out we are more than capable of parenting this gorgeous child, but we would never have ticked this box on the form. x

setting aside financial support via adoption allowance, I think you would have to take into account that some of the support you may need may not be social services responsibility, but fall under the remit of other services - health, education etc.

Looking to the long term, if they are unable to live independently, I have a friend whose 19 year old birth son has multiple conditions/disabilities and now lives in a residential setting paid for by a combination of health and social services funding and the state benefits he is entitled to as an unemployed adult, and his DLA
Difficult decision for you - good luck